Hi Terri, We have been at UCLA for two years, ever since the original misdiagnosis of FTD. Dr Teng corrected that dx and has been most helpful with adjusting dosages and experimenting with medication. Be sure to plan on arriving early. The first time takes a few minutes to figure out where to park and which building is the one you want.

Tue Jun 05, 2012 6:38 am

treewest1

Joined: Wed Feb 15, 2012 11:39 amPosts: 98Location: Victorville, CA

Re: Hi from Victorville, CA

Thank you Heidi and "challenged". I plan to leave for UCLA at 7:30 for a 10:30 appointment. Hopefully that will give me enough time. Have the maps and GPS in my car too. John is getting apprehensive but not so much we can't handle. Will post again when we are done there.God Bless you all,Terri

Next week after your appointment, I suggest you contact two places for support:

1- local chapter of the Alzheimer's Association, which you can find on alz.org

2- the nearest California Caregiver Resource Center, which you can find on cacrc.org. These centers are being decimated due to California's budget situation but a few are still limping along, providing support to caregivers

Robin

Fri Jun 08, 2012 6:44 pm

treewest1

Joined: Wed Feb 15, 2012 11:39 amPosts: 98Location: Victorville, CA

Re: Hi from Victorville, CA

First, thank you Robin for the referral web address.

We had our UCLA visit yesterday. One of John's sons came with me. We saw Dr. Sarah Kremen. After spending some time with the three of us, Kelly and I went to the waiting room while she put John through some written/verbal tests. She reviewed his CAT scans and prior medical records, and the journal pages I had sent in advance of our visit. When we all got back together again, she praised John's memory. His is very good. But his visual/spatial cognition, ability to follow direction, understand simple stuff, and so on, is quite diminished. Along with the delusions, hallucinations, REM sleep disorder, etc. she concluded he has dementia with Lewy Bodies. She indicated she didn't have to refer me to the lbda website as she knows I have already been on it. She praised my research and determination to learn all I could about what we are facing. She said UCLA has PET scan capability, but not SPECT, though felt, and I agreed, that there was really no need to put John through the stress of further tests. Results would not really change the outcome or outlook, just create additional stress. None of his previous test results were indicative of any other possible condition so it's not like we need to rule-out any other disease. I'm glad John and I have had discussions about Lewy Body so the news wasn't really shocking to him. He took it well. What will change is that his condition has been confirmed and now we can set a path for the future. She is going to start him on the Exelon patch and wants to try him on anti-depressants again at the lowest possible dose. We will try Celexa first. A referral has gone out for a Home Health Inspection or safety inspection or whatever they call it. This will help in identifying changes around the house that we can make now that will help down the road to keep him safe. I haven't looked at things that way, so having someone experienced in those matters make suggestions will be very helpful.

Pat, you mentioned in another post about overload, trying to accomplish many things at once, and I have to try and take your advice. My mind is spinning wanting to accomplish all these things like RIGHT NOW! I know I have to get our Living Trust updated, make sure SS, the military, the banks, etc. have a copy of our POA, OMG, so many things!! I will slow down and try to take one step at a time, but I've never been that kind of person. I'm a little, just a little, OCD, and need things just so. This caregiving stuff will really change my perspective on things. It already has actually.

Thanks to everyone who listens and takes the time to respond. Now I need to go read my bible verses for the day. Both of these "forums" keep me going. Love to all, and God Bless,Terri

Terri - glad you had support at the visit and that you feel you have a solid diagnosis. Hopefully the meds will help his symptoms and make life a little more bearable when those LBD symptoms are happening. I think that reducing stress for our LOs makes a lot of sense, including NOT doing unecessary testing. Just getting to appts. for many of our LOs produces a lot of anxiety and then come more LBD symptoms when they get stressed. Getting all the legal stuff updated is really important, so just figure out what's THE most important and chip away at all the appts. starting with the most critical first. It'll all come together. I'm one who wants to get it all done yesterday too, so I can relate to trying to get everything taken care of ASAP. And some things might need immediate attention, especially if John needs to sign anything, if he is still competent to sign legal documents. Lots to do, but it sounds like you have things under control (as much as they can be) and you'll get through this. Good luck! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Terri,It was a good visit with the neurologist because both you and your husband prepared well for it. Sounds like you, John, and the MD are all on the same page with respect to tests. The visit could not have gone better.Good going,Robin

Tue Jun 12, 2012 12:11 pm

Pat

Joined: Sun Jun 24, 2007 5:35 pmPosts: 349

Re: Hi from Victorville, CA

Terri, well now you know. Okay. Deep breath.

Here is what else you know. You are not alone. This is doable. You have resources and people to walk this through with you all the way.

I am also a "want it done yesterday" person and I want to be in control of my situation. I find that making a list of what I need to do helps me. Then I redo the list in priority order. I get to check off things as I do them so my progress is visible to me. It gives me a sense of some control in the situation. Maybe this will help you, too.

Please be sure you get to sleep. If you are not sleeping well enough or long enough, you might want to ask your doctor to prescribe xanax, or something like that, just for those times when your mind will not turn off so you can rest or you are too anxious. I use mine infrequently, but that little bottle just sitting in the medicine cabinet doing nothing at all can give me a sense of some ability to control my stress and ability to rest. You may be able to break a 5mg tablet in half and get a good night's sleep. For me, one little 5 mg xanax at bedtime gives me a good night's sleep of 8 hours, then I am refreshed and ready to go again. If I fight it till 2AM, then I take half a tablet. But if I take it more than 2 nights in a row, it makes me feel irritable and nervous, so I avoid that. This is what works for me.

Terri, it sounds like you have found a very good doctor. That is a huge accomplishment with LBD.

Terri, Thanks for letting us know how you visit went and sounds like you have found a Doctor who does care and so glad you are getting a home eval and I am sure you will be told when you would need this done which will help you pace the changes that might need done, one of the most helpful things that we had done was all the grab bars in various places of the home and I had them all done professionally, the one that was the most helpful was the one I had them place directly on the way in front of the bathroom commode as my husband kept grabbing for the towel bar that was on that wall.

I bet you feel a sense of relief, just knowing what his DX is and not having to sit and wonder !

_________________Irene Selak

Tue Jun 12, 2012 4:35 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Hi from Victorville, CA

Terri, I am so glad the appointment went so well. Now John has not only an excellent caregiver but fine medical guidance as well. Both of those factors are crtical, so, if the word "lucky" can ever be applied to someone who has Lewy for a companion, John is very lucky to have you both.

I am looking forward to having you share your journey with us.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Jun 12, 2012 5:10 pm

Pat

Joined: Sun Jun 24, 2007 5:35 pmPosts: 349

Re: Hi from Victorville, CA

Terri, when you checking out that other "forum", you might try Matthew 6: 33-34. That one will take you a long way.

Thank you all so much. And Pat, it's interesting that in March, I was part of the Citrus Belt Woman's Tournament in Riverside, CA (bowling). One of my partners, in fact my doubles partner, was named Pat Snyder. She is a younger spouse with a husband who has Alzheimer's. He has progressed to the point of needing an Alzheimer's care facility but she visits him everyday. We discussed my worries with John and she was very supportive. Is she your clone??? I haven't talked with her since, but I'm encouraged to give her a call.

I was talking with John this evening about getting some issues taken care of. We need our Living Trust updated so that if something happens to me, he will be taken care of. He kind of scoffed at that so we got into another discussion about excepting reality and making plans now rather than later or when it's too late. I enumerated some of the things we need to do, such as getting our Power of Attorney recorded. I hadn't done that, nor did our attorney at the time indicate that it was required. It may not be in our state. We do have a notarized copy. I did suggest to him that I make a list of the things I think need to be done and he can add to it if he thinks of something. I asked if he trusted me. He closed his had, stuck out his thumb and little finger, and rocked his hand back and forth, then said "some." He could have knocked me over with a feather. I left the room then and went about my business. He walked in later and asked me what I was doing. I was writing this note and closed the screen and told him he didn't need to see since he didn't trust me. I was so hurt, but know he didn't mean it. It's the stress in me, I know. I'll work on that and follow some of the very good advice I'm reading. God bless all of you.

In our state (California), a POA doesn't need to be recorded. Note that many financial institutions have their own POA documents that have to be completed as they don't accept the POA.

Not being trusted by the LBD spouse seems to be part and parcel of LBD. Several in our local support group have had to get attorneys when the LBD spouse shut them out of access to accounts. Tread carefully!

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